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Hi I've not been on here for a long time.Over 3 years ago I was told I had womb cancer. I was put on 6 monthly biopsies as was not ready for a hysterectomy. During these 3 years + my biopsies were forever changing.
I have now been told my biopsy shows complex hyperplasia with atypia suspicious of adenocarcinoma. I have my op date however am not convinced of my diagnosis.
Hello Anna48 I just thought I’d pop in and say hello and welcome. I noticed you hadn’t had any replies to your post. My experience is very different to yours so I can’t offer any relevant experience but I’m sure some ladies who have will pop in soon. I know it’s much harder to speak to medical staff just now but do you have a Clinical Nurse Specialist who you could discuss your concerns with? Or you could possibly ring your consultants secretary and ask for a phone conversation with the consultant and ask them to explain their diagnosis in more detail. I hope you get the answers you need and that every goes well for you when you have your op. Take care.
Sadly, the original nurse went off again and her cover nurse seems too busy to want to speak to me. I feel so extremely alone as live on my own, have no family or local friends and have basically been left to get on with it.....
I have been totally emotionally neglected in considering my personal, horrendous & maternal torterous experiences.
I am in turmoil over my real diagnosis and although requested don't know my exact results, have not had an MRI as requested, have not received a letter confirming hospital admittance address or time therefore can not make concrete arrangements for a care plan... In my own mind.. Cats & dog... And me for after care..
However, thanks for your reply.
I believe especially at the moment that there is real concerns about cancer being the forgotten c or even other very complex conditions. Its understandably frustrating for you not to have a real proper discussion of your condition or a letter detailing the where and when for your op and just being able to understand what's happening and waiting on an MRI too. Lots of things have been delayed or cancelled due to corona virus but it also doesn't really excuse no one in your medical team being able to talk to you about it. My experience like Fairycake is very different i was diagnosed with womb cancer after having irregular bleeding and because they felt there was a real risk it had spread out the womb i was given no option but to have a hysterectomy straight away, lucky that it hadn't spread so no further treatment, but I just wanted to reach out and say that I understand the frustration and understandable fears, its much harder when your alone and unable to discuss these things I am lucky to have family and friends but I keep so much back from them too because I feel that they can't understand, so I know being able to speak with someone who does understands is so important so I hope one of the other ladies may pop up who have had a similar situation.
What is a Community Champion? Womb cancer forum
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Thank you for your reply I appreciate your input. I'm still hoping someone will contact me as my op is on Tuesday. I'm struggling and am afraid I will back out again. I just feel there is little understanding of this fear xx
Hello again Anna48 I’m so sorry that you’re feeling so afraid and alone right now. I think you’re in a horrible limbo state where no one is able to get back to you and that’s such a hard place to be. Im sure many of us here remember the various fears we had during the waiting stage. I wonder if your GP might be able to speak to them for you? I can only send you a gentle hug and say that I hope everything goes well for you x
Hi Fairy cake I have left messages for the nurse to ring me but she went off just after I got my op date and her colleague whom I haven't met is busy. I'm still waiting for my letter confirming my op date on Tuesday as its not at a hospital I have ever visited. I'm having my covid test tomorrow at another hospital in outpatients. Its all a bit uncertain but what will be will be...TThank you xx
Good luck with your test and your op on Tuesday Anna48, I do hope they can phone you soon and give you some reassurance and also directions to this other hospital and the procedure for the day, times to get there etc.
Thank you GBear... I got a call this afternoon. I spoke to the nurse and she confirmed its grade 1. Fingers crossed its no worse. Had a busy day with phone calls to organise support. Almost there... Still nervous.. Fear of the unknown..Xxx
Hi Anna48, and Shell56,
If it's any consolation I had a lot of trouble before my operation with the date being changed, and that was well before the virus! They suddenly called me for a pre op on a Friday before the operation on a Tuesday. I spent all day at the hospital having a pre-op and a chest Xray. I arrived home to find that the hospital had cancelled the operation for another 2 weeks. It turned out they had an emergency admission!!!
I, too worried about the operation, being 72 at the time. I worried about my blood pressure, but that behaved itself! I worried about the anesthetic, but that was fine, just made me terribly thirsty. I worried about recovery. I had keyhole surgery, which is the most marvelous invention!!! I recovered well, and I can honestly say the pain was less than having my tonsils out in my 20's!!!
I'm sure you will both be fine. xxxxx
My name is Lesley I have been through a very traumatic 6 months but I have survived it pls message me with any concerns or questions x
Hi Shell went for my covid test today. I had been shielding as per instructions only to find the hospital was mixing patients within the waiting room... I had my test but now have concerns that my shield has been breached. My op is scheduled for Tuesday and I am finally feeling I can do it... I only hope they don't now postpone.
Please keep in touch to let me know how you are. Take good care xx
I admire you... Im 20 years younger and so afraid. I too have other health issues. Pain and anesthetic are my worries too although I have a good threshold normally... Fear of what's to come. I will be relieved when it's over.
Thank you for your reassurance. Xxx
Hi Lesley how are you. Have you had your op. How did it go? How long was it before you got your results? Did you need any further treatment.
I hope you are bearing up xxx
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